Sunday, October 31, 2010

Dialysis removes toxins, this helps his health overall, including his eyes. He still can't see detail due to cataracts, but his vision has improved some over the last week.

When we are back in Hawkes Bay permanently, we'll be looking into the next step on getting his eyes done, at least the right eye. Fingers crossed by Christmas, but probably the new year. The left eye still looks mutant. The redness has gone from it, but the x-files buldge look is still there and looks inflamed somedays and not so much other days.

Saturday, October 30, 2010

Our Renal Specialist visited the dialysis clinic this morning and was happy with Larry's progress post surgeries. The tenchkoff surgeon is happy for him to start peritoneal dialysis asap, but the Renal Nurses - who have more experience with this - prefer him to wait the 3 - 4 weeks. We'll meet our Renal Nurse sometime next week and will know definately our date to go home. My guess is the 20th of November.

We've been told the education is pretty indepth and can be a little overwhelming and is mostly about the bag changes, dressings and taking care in a sterile environment. I've been watching the renal nurses and I have a general idea.

Peritoneal Dialysis is more easy on the body than Haemo Dialysis and can be done in the comfort of our own home and at night, so we have the daytime to go about our business.

Larry has reported that he has not had any blood leakage in his eyes for weeks now and said today has been the best day as far as his eye sight is concerned. He said his eye sight, today, is good enough for him to drive. This is great news. He's still not driving as far as I'm concerned.

The renal nurses are quite impressed with his progress and how his body is handling the treatments.

Friday, October 29, 2010

We have a final Renal Specialist appointment on the 11th of November. I'm not entirely sure whether or not the peritoneal dialysis will have begun at this point, but it would only be a matter of days after the appointment when we will be able to go home permanently.

Wednesday, October 27, 2010

Everything has healed well, the surgeon is happy for Peritoneal Dialysis to begin, but the Renal Nurse begs to differ and she thinks 3 weeks waiting is better. I wish she understood how much it sucks to live out of a suitcase, miss the comforts of just being home and losing privacy when you move in with someone else however temporary it is.

The good news is, he can shower now after weeks of semi-showers.

The best news would be that we could go home next week .. but that doesn't seem hopeful.

Monday, October 25, 2010

As of tomorrow, dialysis will be 3 times a week. Tuesday, Thursday and Saturday. Fluid intake during our trip away was manageable when I combined it with death threats. It's easy to stick to 1 liter when your life depends on it.

Summer is coming, now Larry doesn't walk around wrapped in a blanket 24/7. He even had the window down during our drive today. Before dialysis the heater needed to be on and all windows up on a hot day similar to today.

We were told when dialysis began that in a couple of weeks he'd have the "spring back in his step", and he has.

When we go home indefinately (hopefully 2 - 3 weeks, possibly 6) we'll take care of his eyes again. They've been put aside for dialysis.

Sunday, October 24, 2010

One of the reasons for coming home was to collect our mail. I had hoped there would be something from NZ Immigration. It was not so. There are two applications in. His Residency application and the Work Permit application. They also have his passport because it was required for the work permit application.

I've learned that calling immigrations customer service and inquiring may or may not irritate someone there, so I refrain from doing it because as long as there is an application pending, he's ok to stay.

Fluid retention, if any, over the last couple of days has been minimal and he has been successful in keeping with the 1 liter of fluid allowed.

Back to Auckland tomorrow. From here we wait for the tenchkoff to heal. While that heals he continues haemo dialysis and the education for peritoneal dialysis begins.

We also have a prescription for 6 weeks of Recormon. That's $2400.Yeah right, it can stay in my car until we win the lotto as far as I'm concerned, which didn't happen last night, by the way.

Saturday, October 23, 2010

Tramadol has been his friend since the Tenchkoff surgery. It works wonders.

Strict diet begins today. Since he is missing his Saturday session of dialysis, he needs to watch his fluid intake. It's all about urination this weekend and I'll refrain from the details and stats.

The whole dialysis and diet thing is frustrating me. He can't have this, he can only have so much of that, a serving of this and stay well away from that. After going through the list all that's left is cardboard and fresh air. The diet part is the hard part because I almost get into a domestic dispute trying to explain to him why he can't have a double whopper burger and large fries and at times I've given in just to lessen the headache.

Thursday, October 21, 2010

I could see the something was wrong this morning when he walked out of the bathroom. He looked bloated and retaining fluid is a hideous side effect of dialysis. Urination becomes infrequent and may stop completely. We're at the infrequent stage nearing the stopping completely stage.

On top of that hes having pain around his bladder area. The catheter seems to be sitting on his bladder causing pain and the feeling to urinate. Again, this is normal. One of the nurses suspected a Urinary Tract infection because they've restricted him from having proper showers, but he shows no signs of this and the catheter on the bladder scenario sounds likely.

We were going to head home today, but he's not up for the trip so we will try for tomorrow.

There are currently 14 humans in this 3 bedroom house. The only thing missing is the wheels on the bottom of the house.That's what it feels like.

Tuesday, October 19, 2010

Apart from being an hour later than the scheduled time, all went well. Surgery took 45 minutes, recovery took 45 minutes and the time it took to get from the hospital back to the house took an hour.This is why it's important for Larry to get his eyes done. He listened to Transporter 3 because no matter how close I put it, seeing it just wasn't happening.Recovery.You can't see his view, which is Rangitoto Island, an inactive volcano in the Hauraki Gulf. Rangitoto is Maori for 'bloody sky'. I felt it my duty to share that potentially bit of useless information.

It's Tenchkoff day.Early morning this morning. 7am check in at the hospital. Its a first in, first served deal and unfortunately, even though we arrived at 6.30am, there were four people before us. His surgery is scheduled for 10:15am.

It will be a lapriscopic surgery through the abdominal wall (micro surgery for Larrys Mom), and will take 45 minutes. He will spent a further 45 minutes in recovery and 2-3 hours in a ward before being discharged around 2pm this afternoon.

Saturday, October 16, 2010

The public health system in New Zealand is overloaded with people needing dialysis. Up until recently, dialysis was denied to people over 80 years old because 1. Resources were minimal and 2. Some genius played God and decided that no one needed healthcare after 80 years old.

This is the only clinic in New Zealand that offer private dialysis care. There are at least 10 chairs in this clinic that I have counted. There may be a couple more out of view that I'm not aware of. This is exactly why having Kidney Failure is a big no-no as far as the Immigration is concerned.

The other 8 people in here today have come from the Waikato region, an hour away, by shuttle. They're delivered at 7am and leave around 1pm. Most of them are of Polynesian descent.

We have more sheep in New Zealand than we have people and it seems that NZ feel its meat exports are more important than its residents. Meat exports boost the NZ economy, why doesn't the money go into the healthcare system? Who gives a crap about the Kiwi and Kea being endangered, peoples lives are endangered because money is being spent in the wrong places by a Government who claim to be for the people. If money was being spent on the health system, which is a necessity really, then hospitals wouldn't be under staffed and medical personnel wouldn't be on strike, like the Lab Unit at Middlemore hospital will be next week.

Today marks a week of Dialysis treatment. Dialysis takes over your life. I can understand the depression it sends people into and that opinion is gathered after only a week of sitting here. Endurance is my life right now because Larry could easily fall into the same pattern the other 8 people here live with daily. After talking with some of them, they're just so tired. Go figure. It's only 4 hours per treatment, but one woman comes four times a week and she's in her 8th year of Dialysis.

It's an eye opener for my people and the need to change and control their diet. It's also an eye opener as to why we have loved ones. I can't imagine Larry going through this with people who were in his life before I came along, and I'm not just blowing smoke up my own ass for the fun of it. It's quite true. You have to have the stamina to simply apply yourself to endure just being a supporter.The Port. He got a free chest wax the other day when they ripped off the adhesive bandage that was applying pressure to the incision sites.Masseur Dalek.The Artificial Kidney.Day off tomorrow.

Friday, October 15, 2010

I thought it was 12 hours long, but its only going to be 6 hours long. I had hoped we got the weekend off, we both could use the sleep, but it wasn't so. We have Sunday off then back into it again on Monday. Eventually, dialysis (haemo) will only be 3 times a week at four hours per treatment. When the catheter heals completely after surgery (4 to 6 weeks) and peritoneal dialysis begins, then we can go home.

ETA on going home? December. Yuck.

We're in a day stay unit at Middlemore hospital today. Larry can't keep still. The discomfort is irritating him. Isn't the hospital the worst place for someone to be when they have no immune system? I'm just saying, because the dude two chairs over looks like his next stop is Heaven.

Thursday, October 14, 2010

When they hook him up and pull him off, I have to leave the room as a precaution against infection through the tubing. One of the tubes leads straight to the heart via the jugular vein so .. I get out.Four hours of Dialysis today. A blood transfusion tomorrow and nothing but miscommunication between the private health system and the public health system. 3 pints of blood at 4 hours per bag. Even though the hospital is a 2 minute drive from my sisters house, I'll probably sit there with him all day during the transfusion because he'd want it and I'm happy to do it.

We found out today that it takes 4 - 6 weeks for the tenchkoff surgery to heal, we were told 3 weeks originally. During that healing time, he will continue to get Haemo dialysis until his catheter heals. It irks me that so much money is going into this and I know it's support, but it's just so much money.

If you know Larry, you know he talks alot. I had to tell him to shut up today because he was holding the nurse up trying to educate her about dialysis. I assured him that she probably already knows.Dialysis Clinic.

Tuesday, October 12, 2010

"Going Flat" in dialysis terms means, "Give me agua! (water)".This happened today.Larry has a sense of humour, so when he stopped responding to me and put his hand on his heart I had to ask him if he was tricking, because he has that tendency. Yesterday he said he saw a light then opened his eyes, looked at me and uttered, "You're not Jesus". When his eyes began to roll back it was time to call the nurse.I can't remember the explanation they gave, but it was a mixture of needing water, low blood sugars, body going into shock because today's dialysis treatment was to be 4.5 hours long and alot of dialysis over the last couple of days. His heart rate was slow and irregular, he was unresponsive, needed oxygen and they stopped his treatment 40 minutes from completion.

The nurses responded accordingly.I love those women and it wasn't so scary because they knew what they were dealing with and were quick to respond. That's the only reason I didn't back myself into the corner and scream save him. I gathered my chi and let them do their job.

He has been taken off a couple of his prescription drugs, but the worst part of his meds are all the eye drops he has to instill at different times of the day. Easy to forget.

He drank tea today, because he needed a sugary drink to bring him back to Earth. I told the nurses it was against our religion and Larry said we'll let this one slide because it was for medicinal purposes.

Monday, October 11, 2010

With his immune system shot, he's susceptible to basically everything viral. After the first round of dialysis we returned to my sisters and her 2 year old was diagnosed earlier in the day with the 24 hour Rota virus she had picked up from daycare (sharing food, daycares fault). We weren't home for an hour before Larry had symptoms and so it began.

That was the hideousness that was Saturday night.

His blood sugar is up from a usual 5 to 9. 9 being a little on the high.

Day two of dialysis. He lost 2kg since Saturday. I'm pretty sure 1kg of that is from the haircut.

Sunday, October 10, 2010

Larry got a haircut today. I was supposed to take him to his usual barber in Hastings before we left, but we left sooner than we anticipated. I took him to a barber in the closest mall. Three Indian guys who barely spoke English were the hairdressers. As we sat waiting I'd listen to the other clients when it came their time for cutting. They knew what they were talking about. "A three on top and a two on the sides", "Three all over" and so on.

When Larrys time came, he sat in the chair and said "Long on top, short on the sides". The hairdresser didn't understand this and after a few minutes of trying to understand eachother I hear Larry finally say "Cut it like yours".

Before I could protest, he was already getting what I found out was a "2" all around his head. I text my sister swear words as I watched because she suggested the place.

The guy had a faux hawk and my blind husband couldnt see that.

I'd say this is a perfect example of what a wife is for, but it would only be perfect if he didn't have a faux hawk.

Our evening was saturated with nausea and complaints of pain and discomfort. Rightly so.By midnight it was time for bed, where he slept well.Today there is a little blood from the incision site, nothing that can't be fixed with hyperfix.Dr called to check in, he is happy with his overnight progress.A free day today.We may head out to find New Zealands only Baja Fresh equivalent MexiCali, it's in Auckland somewhere.His fluid intake is limited to 1 liter per day, this includes water in foods and beverages.He will slowly be able to bring protein back into his diet, bio-proteins.He misses bacon, because bacon is the answer to everything.

Dialysis removes fluids in it's process. They took 1kg from Larry during yesterdays treatment. Hence the nausea.

Saturday, October 9, 2010

The dialysis machine.Looks like a pimped Dalek.2 hours of haemo to begin with.The nurses were happy.He was content.Currently, he feels like crap.If ever there has been a time, at all during this whole journey, where I wanted to just give up, it's this weekend. That's after having 45 minutes of sleep in 48 hours and dealing with a seemingly delusional man, which is apparently a side effect of ESRF.

I've been waiting for him to tell me he's backing out of treatment again, because that's when I'll exterminate him.

Friday, October 8, 2010

We wound up in the Emergency Department about an hour after we got home from the hospital this evening. First the blood at the site oozed, then congealed, then stopped then came back with a vengeance. It wasn't so much that I could see the blood pooling down his shirt, but the color left his face and his lips began to turn blue. Naturally, he thought he was He-Man and didn't want to go back to the hospital, but I pulled rank.

In a foul mood, we went to the Emergency Department where the receptionist told us her life story. With my husband bleeding and turning whiter than he already is, I quickly told her I didn't care and stated the urgency.

Long story short, he needed another stitch and was discharged .. not before he talked to the Doctor about 3D Animation and Lightwave vs Blender for 30 minutes.

I hate public health.

All seems well right now.In trying to be optimistic, the clock telling me it's only 11.40pm is giving me the chills.

I just want 6 hours of sleep.Sleep and I haven't been friends since May 2009.

Did you know? Some people thought Larry's illness was fiction.Here's Larry before surgery, basking in the sunshine like a lethargic reptile.No idea what the steps of the procedure are.That thing was like half of a knitting needle.Tasty.That's the haemoglide.Installation.Continued.In.Out.More anaestetic.Jugular. This part was a little horrific.Catheter.30 minutes later, all done.He was discharged from hospital. I think that was a bad idea, but you can't tell a man what to do at the best of times no matter how hard you try.Dialysis tomorrow morning.

Out of surgery.All went well.I was able to sit in and watch.Greys Anatomy tend to embellish.The anaestetic hasn't worn off yet.I'm looking forward to when it does, he's been calling me a primate all morning.If all goes well, he should be discharged this afternoon.

Thursday, October 7, 2010

He will have a tunnelled catheter installed tomorrow, which will be placed in the jugular and will exit out of his chest. The tunnelled catheter is designed for short term acess, which in Larry's case (haemo) is to stabalize him for peritoneal dialysis some 4 weeks away. He will not need the fistula like we originally thought. He will require haemo 2 hours a day, 3 days a week for up to 2 weeks, but the specialist thinks he will be stable after 1 week.

Pending the outcome of tomorrows surgery, he should be out by tomorrow afternoon. There is a risk of bleeding. Should this occur, he will be required to stay in hospital and undergo a blood transfusion.

Dialysis will begin on Saturday.

October 19th - Tenchkoff surgery.

We can go home days in between him being dialyzed, but that's a $200 return trip and I'd rather endure my sister than go home 3 times at that price!

Wednesday, October 6, 2010

What a day, and it's not even lunch time.Idiocy on the forums.An eye appointment turned out to be laser surgery. On top of that his left eye is not healing and doing weird things that the doctor can't diagnose or pin point right now.And then, we need to be in Auckland on Friday to put in a fistula. His health is dire, he needs haemodialysis to stabilise him for the catheter surgery.On top of that, our car is a crapshoot and needs to go into the shop, but we don't have the time so we have to drive to Auckland on it anyway.

Tuesday, October 5, 2010

We're going back to Auckland next week.His blood work wasn't good today, so it's likely he'll need Haemodialysis and a blood transfusion, unless we can miraculously get his creatinine and hemoglobin down and up this week. How we managed to get it down and up in 2 days a few weeks ago, I'm not entirely sure.We've been told we'll be in Auckland for up to 6 weeks.I didn't grow fond of Auckland while we were there, but what can you do.The Doctors are happy he changed his mind, I'm happy he's changed his mind.We see the eye doctor tomorrow. It's supposed to be for more laser surgery, but the last thing we need right now is for issues to arise with his eyes so close to dialysis.

The pharmacy also discovered today that we weren't supposed to be subsidized, so cheers to paying for prescriptions now AND thumbs up to $200 on Recormon today. This morning Larry begged me for an iPod touch, to listen to his music because our tastes in music differ. I was all for it until we were handed the Recormon prescription.

Monday, October 4, 2010

I think it's important for him to get his eyes done and this is what will take priority right now.

We talked with one of our church leaders yesterday and he bought up a point that I never considered before, which was that New Zealand have an immigration scheme you can apply under called the Expression of Interest. This category is open to people with specific skills that New Zealand lacks and creative artists falls under that. Larry qualifies for this (he also qualifies with his actual degree - Laser Optics Technician - but he has not worked in that field for years), but with his eyes as bad as they are at the moment he wouldn't be able to work.

We have this on our side and it's important to get his eyes taken care of first.

There are over 16000 illegal aliens/overstayers in New Zealand. Worst case scenario: Should he not get residency, he will overstay until I get my US Residency back. During that overstaying period, any medical expenses will need to be paid for out of pocket. Here's where getting his eyes fixed comes in. With his eyes done he becomes independant. I can go to work. He can work from home. We can pay for his treatments.

Best case scenario: New Zealand grows a heart and grants him Residency despite his illness.

I think it's best we continue with his eyes.I know he's scared and I don't want the darkness, that is his vision, adding to that.Our church leader talked about quality of life yesterday.What is that when you have no sight?

Sunday, October 3, 2010

It's been an intense week and I'm fortunate to have family to go through the emotions with us. I've run Larry's decision through my minds centrifuge for the last 6 days and finally have a full understanding of why he came to his ultimate decision, and it's money based. Understood.

I asked myself if he was suicidal. That was pointless, so I asked him and he laughed.

He explained, as he had on Monday night, that he's exhausted from being sick and exhausted from the mental effort he has to muster up just to make it through another medical visit. Again, understood. Add into the mix the kurv ball. Add to the mix the Immigration situation. Add to the mix the must-be-pre-paid healthcare system here. It's a hybrid of fatigue. Go figure.

Our Doctor called on Saturday night, and I'm glad she did. I thought that after his decision, she'd drop us as patients - but she was genuinely worried and dialysis aside, she'll treat him the best way she can without dialysis.

Should he get residency in New Zealand, we will go the dialysis route, but right now that's the million dollar question or at least the $56,000 a year question.